Tomorrow I go in for my several-times-a-year nerve-blocking injections. My pain specialist doctor locates the nerve clusters which are causing the most ruckus and injects them with a numbing medication which quiets them down for a while. I end up having to do this about twice a year. It’s not very pleasant; I’m fasted and I have an IV, but at least I’m (usually) fully sedated for the injections themselves. With a previous pain doctor, I woke up during the procedure once and it’s not something I’d like to repeat. They tell most people that they can go back to work the day after their injections but, as usual, I am not most people. I usually end up pretty well bed-bound in pain for about 10 days after them, and I’m still tender for a while after that. We’re going to be doing some extra sites this time so I imagine it might make my recovery a bit less happy than usual even.

But even with the intense recovery period, which Geoff helps me tremendously with (he gets me anything I need, yells at me to lay down unless I’m getting up to use the bathroom, we watch endless movies in bed, he fetches me vegan donuts to break my fast, he makes sure I have plenty of food and water at all times and I’m as comfortable as possible), they do help. The pain never completely goes away, but it knocks it down several numbers on the pain scale after my body settles down. Wish me luck tomorrow! Right now I’m just looking forward to having it be over; I’m done with anticipating it.

I’m very excited to announce that I will be featured in a local gallery, the Creative Arts Group! The show will run for almost nine weeks, from June 6th through August 5th. They will be showing eight of my DreamWorld pieces, with models Dedeker Winston, Katie Johnson, Dan Donohue and Travis Weinand. This will also be the first show that I’ve been able to use my fancy new printing paper for; Hahnemuhle fine art pearl paper (provided by the truly excellent Lauren from POV Evolving printers in downtown LA). It’s quite spectacular looking!

In addition to the images, they will also be displaying costume pieces and props I’ve made for the images, including the entire flower-festooned Spring Faerie costume. This is always how I’ve envisioned DreamWorld images being shown, with the costumes and props alongside the finished images.

I’m planning on being there the first Saturday of the show, June 6th, from 12-2 for a short opening reception if you’d like to stop by! If you do come by, firstly, thank you, and secondly, feel free to mention to the gallery staff that you’re there to see my work 🙂

Many, many thanks to everyone for your help and support along my art journey, whether you’re able to come to this show or not! The gallery info is below. I hope to see you all there! 🙂

The mystery image revealed!

I’m so happy so many of you have joined in my print giveaway! There is still time for you to enter, which is free and easy to do! Scroll down below for details, but most of the ways you enter are simply by sharing/retweeting messages onto various social media outlets – all of which are now embedded in this post! Just head down to the very end and you’ll see all the different ways you can participate without even leaving this page!

If you missed my last post, let me summarize it for you. Today, May 12th is Invisible Illness Day; a day we dedicate to raising awareness about illnesses and diseases which can be deadly and have devastating consequences, yet show little to no outward sign. Every single person with any of these illnesses, such as fibromyalgia, Chronic Fatigue Syndrome, rheumatoid arthritis, Lyme disease, lupus, multiple sclerosis and Crohn’s Disease, (and, of course, myalgic encephalomyelitis, or ME, which I have*) has been told at least once, “But you don’t look sick.” As if that invalidates our decades of suffering. Oh, I’m sorry I didn’t meet your criteria of what a “chronically ill” person looks like; you’re right, I’m 100% fine! In fact, I’m going to go complete a decathlon, now that I know I’m healthy.

Ok, so clearly simply not appearing outwardly sick doesn’t mean we aren’t ill. In fact, most people who saw me on the street would probably assume I was a perfectly healthy girl; although one who doesn’t put a lot of effort into her appearance. The reality is that I am partially house-bound, I can only drive short distances on very good days, almost all “out of the house” errands have to be done on weekends when Geoff can drive and help me, I’m in constant pain and exhausted every single second of my life. My energy reserves are very low and I have nothing extra to spare on “getting pretty” before I go out. As long as I’m wearing actual clothes (you have no idea how many times I’ve almost left my house without key clothing items), that’s enough for me. Shove on a hat so I don’t have to address my naturally curly hair and I’m good!

While I never overly cared about what I looked like in public, I do find myself missing wearing pretty things. I put far, far more thought and effort into picking out my pajama outfits that my regular clothes outfits. I’ve accrued quite a collection of PJs at this point, so I can at least feel like those are cute and colorful.

While worrying about one’s physical appearance would seem pretty far down on the priority list of someone with a neurological disease with no cure, and it is for me most of the time, it’s a little more than that. It’s just one more tiny slice of normal life that chronic illness takes away from you; one more reason for you to resent it. I don’t actually want to wear the dresses getting dusty in my closet, I want the option to choose to wear them. That make seem like a small difference, but from this side, it feels big.

While I don’t feel like I can spare the energy for looking beautiful most of the time, beauty is still deeply important to me, and it’s important that I leave the world with more beauty in it than I found it. It’s like when you go camping with your dad; the camp site is going to be cleaner when you leave than when you got there (or at least, that’s how it was with me dad ;)). I’ve come to realize that beauty is a big part of why I’m so drawn to art and to create; it’s a very tangible way of leaving the world a little more beautiful. And in this case, it’s taking the hideous ugliness of disease and transmuting it into something lovely.

With that in mind, I want to introduce my latest image to you; the one I will be giving away a 10″ x 15″ print of on May 29th!

I spoke to you a bit in my last post about why this image is so special… and I’m going that a little bit again 🙂 For one thing, this is a DreamWorld and Enchanted Sleep crossover piece; the first image of mine which belongs equally to both worlds. It spoke to me on both levels, and when I was torn about which series to include it in, I finally decided I didn’t HAVE to choose and it could live in both. Because, while in some ways, DreamWorld is a bit of escapism and fantasy for me, it is not all sunshine and rainbows. Not many of its dark characters have been photographed yet, but they will be introduced over time. Even with their benevolent protectors, their King and Queen, the creatures in DreamWorld still have problems.

At the same time, it helps me to look at ME through the lens of myth and fantasy. Viewing it as a dragon to be slain, a mountain to climb, a thorn in my side to bear; they all help me live with the reality of ME a little more easily.

I have long felt a connection between the stories of Sleeping Beauty and my experience with ME. A poison, an enchanted sleep (giving birth to my photo series’ title), hope of an awakening under the right conditions… there is a great deal of overlap. With that said, let me show you the new image!

Now, this file ended up being a composite of… I don’t even know how many images. A LOT. To give you an idea of the huge scale of the piece, here it is with a normal, full-sized image from another shoot with Katie on top of it.

So, just roughly eyeballing it, I’d say this is, what, 5-6 times the size of an average image? And while my camera doesn’t produce the HUGEST files imaginable, this is still pretty darn big. It was such an enormous file, I had to wait until I’d upgraded my laptop before I could actually work on it. Any time I tried to edit it on my old laptop, it would crash my whole computer after about 10 minutes of work. With my new laptop, it only crashes every few days, and usually only crashes Photoshop, instead of my entire system. Much better 🙂 All said, this took almost two years from start to finish. I’d pick it up, do a little work, get overwhelmed and put it back down. Then I decided it had to be done in time for the giveaway, so that gave me the motivation to finish it up.

I’d made a homemade spider repellent (nothing which would harm them, just something with tea tree oil to make the area less appealing to a few days) and sprayed it liberally around the shooting area in the days leading up to the shoot.

But despite it, it was a pretty intimidating place to ask any sane girl to lay down in, relax, close her eyes and pretend to be asleep. I promised Katie that I would watch for any spiders actually crawling on her and scoot them off. I promised no harm would come to her, and, bless her, she trusted me.

Now despite it being just covered in cobwebs and spiders, I ended up having to add all the cobwebs in Photoshop. I downloaded a special Photoshop bundle of brushes shaped like cobwebs, which got me started. It took a ton of manipulation of each little bunch to make it look like it way laying naturally over the different areas, adding light and shading to blend it in to the environment.

After I got Katie situated, I climbed up on a ladder and started shooting. But I quickly realized that the ladder wasn’t tall enough to get the framing I wanted, which led to shooting about a million individual frames which I pieced together in Photoshop, which is why it’s such a huge file. There were some challenges in making everything align since I wasn’t using a tripod, but it helped that Katie had trusted me so completely and was lying perfectly still.

I had also shot a purple smoke bomb pouring out of the bottle (separately from Katie, I didn’t think that would be good for her to breath) but then that ended up not really looking right either, leading to another element I had to create in Photoshop.

I always try to do as much work in camera as possible, but sometimes the real world just doesn’t accommodate you!

Katie’s bravery and willingness to do whatever it took to get “the shot” made me create this virtual plaque for her:

Thank you, Katie 🙂 This image would not exist without you. It’s one of my very favorite images and I’m SO happy we went through all the difficulties of making it, even though I wanted to tear my hair out at times!

Another thing about this image that’s special is that it will be the first to be printed on my new, museum-quality paper of choice: Hahnemuhle pearl paper. You really have to see it to believe it. It is a thick, luscious paper with a bit of texture to it, similar to watercolor paper. What pushed me over the edge into switching to this paper though, is the very subtle, pearlescent shimmer built into the paper. It is magic. And it compliments the ethereal nature of my work so well, it seemed we were made for each other.

And did I mention that this special new print is a $400 value?

Would you like to win this very special print for yourself? Instructions are below! If you already saw my first post, skip on to the info about how to enter, if not, please consider taking a moment to read it and see why I’m so passionate about promoting May 12th and my giveaway!

My Kingdom Of ME video –

I would like to say that I spent a great deal of reflection on coming up with the idea of my bed being my kingdom, but it was more of a response to thinking, “Shit, I have this video… now I need a name for it…” But I think it holds true despite it’s spur-of-the-moment conception.

When you spend the vast majority of your time inside your house, it becomes your entire world. If, on a good day, I take Calantha for a walk around the block, I feel like a Viking setting off to explore new lands (but not planning on Blood Eagle-ing anyone). If my house is my world, my bedroom is my home, and my bed becomes my kingdom.

Though it is a queen-sized kingdom, it is a kingdom nonetheless. This is where I am most myself, most honest, most raw, most pure. I spend most of my time here, in my PJs, hair a mess and no makeup (because who’s going to see it, I don’t feel like putting it on, and I especially don’t feel like washing it off). This room is most set up for my comfort and is bent to my will. Why is there such a huge pile of stuff always on my nightstand, or next to my side of the bed? Because then I can reach it easily, no matter what state I’m in. Geoff’s side is spick and span, while mine is a crazy jungle, but that’s how it has to be. In this whole world of things which cause us pain and discomfort, we need there to be someplace that is designed for us. That is, usually, our beds. And in my bed, I rule.

My art and my Enchanted Sleep series –

Some people are surprised to learn I have a chronic illness, especially one which confines me to my house and bed so much, since I seem to produce a lot of art. It’s all the result of verycareful planning of everything. I keep my shoots very short and I plan several concepts I can shoot one right after the other while I have my model. My shoot is usually the only major thing I have planned for the week. Actually, it’s usually the only major thing I have planned that month. If we’re driving to a location, my model will usually drive us since I’m often feeling too tired. I try to bang out as many concepts as I possibly can, then I crash. Usually the next two or three days will be awful, and I will pay dearly for my shoot. But after that starts to wear off, I can sort through my images and work on editing them… which is only possible because I can do that with my laptop while lying in bed. If I had to sit at a desk, I could not be a photographer.

Using my laptop and my Wacom tablet, I can create art again. There was a while as I was getting sick where I was truly terrified that art would be taken away from me. In one sense, that did happen, since I had to put away the pencils and paintbrushes which became too painful to wield, but art abhors a vacuum as much as nature does, and photography quickly sprang up in its place, with help from my photographer husband.

Photography has given me a voice. But it’s more than that. It’s given a voice to all of us who suffer from these invisible illnesses. When I started shooting the images which would become a part of my Enchanted Sleep series, portraying what life with ME is like, I never dreamed that other people with illnesses would flock to it like they have. I unintentionally tapped into an underserved community, and those within it have made their approval loudly known. I didn’t set out to capture anything but my own experiences, but in doing so, I captured all of ours.

This is why you should care –

ME alone effects millions across the globe. There are millions and millions more who bear other invisible illnesses, and you might have no idea that they carry these with them everywhere they go. Most likely, you know someone with one of these illnesses, though it might be undiagnosed. Most of the invisible illnesses tend to be diagnoses of exclusion; meaning there’s no one test for this disease, so you have to rule out EVERYTHING else that it could be before you decide what it is. It’s a long, grueling process, and not everyone really wants to know what’s wrong with them anyway. For me, I couldn’t stand not knowing.

Your aunt who often complains of pain? Your friend who frequently has to cancel plans? Your sibling who gets migraines which always come at the worst times? They may have one of these diseases.

The online chronic illness community (spoonies, we call ourselves) is extremely supportive, but we need to have healthy people on our side too. We need real changes to be made in the world, and frankly, we are too ill to do it all on our own.

These are not diseases which merely dampen our fun or mildly cramp our style, these are diseases which kill. Sometimes that death is a suicide, as the patients cannot stand the suffering any longer. Even if left to more “natural” courses, these illnesses are evil thieves and rob us of years. They take away our livelihood, our joys, our passions and, eventually, our lives.

This is how you enter –

Here’s how this giveaway works. It’s going to be very easy and there are quite a lot of ways for you to enter!

First thing: subscribe to my blog if you haven’t already. There’s a button in the upper right-hand section of the screen for you to enter your email address (which you may do safely, without fear of spamming or other annoyances). Do that, then move on to step two:

You have your choice here! You can either:

Retweet the facts I’ve tweeted about ME (these are embedded at the bottom of this post to make things super easy – you can like or retweet it without even leaving this page!)

(The Facebook and Instagram posts and tweets are all embedded at the bottom of this post to make things super easy – you can like, retweet or share it without even leaving this page!)

Like and re-blog this post if you’re a WordPress user

You can do all of those, too! One note, if you choose to retweet any of my tweets, each new retweet will count as an entry. I’ve given you quite a lot to choose from, mainly because I couldn’t narrow it down myself any more! 😉 So, for example, if you retweet all 11 tweets, that will count as 11 entries for you. However, if you retweet the same tweet more than once, that does NOT count at as extra entry. The maximum possible Twitter-related entries you can get is 11. The same idea goes for the other social networking sites too. If you share my Facebook post, that’s an entry. If you share the same post twice (which I’m not sure you can do, but let’s say for argument’s sake that you can), then you still only get one entry.

And lastly, whichever social media platform you decide to use to enter the contest from, you must like/follow me there (and here on the blog) for the entry to count!

And a couple of other ways to enter –

Now, those are all very important ways for you to enter the contest to win a gorgeous print for yourself. A large part of why the entries are based in social media is to help raise more awareness about ME (and other invisible illnesses) by word of mouth. However, there is another way you can get more entries for yourself.

Any purchases on ANY of the items I sell from today, May 4th, through midnight, PST, May 27th will count as entries! This means that EACH INDIVIDUAL ITEM that you buy counts as its own entry. If you buy five t-shirts from my Red Bubble shop, that’s five extra entries for you!

And on top of the purchases going toward extra entries for you, 25 PERCENT of ALL PROFITS on ALL ITEMS purchased will be donated to theMicrobe Discovery Project! The Microbe Discovery project is a wonderful organization here in the US actively looking for a cause and cure for ME. I strongly believe in what they do, which is why I have chosen them to benefit from my sales.

It’s a very win-win situation! You get to buy whatever it is that you’ve had your eye on, you get extra entries into the print giveaway and ME research is supported at the same time!

On May 29th, I will randomly pick one winner from all the entries and that person will receive the print! It will be signed and numbered and shipped to wherever you live, even if it’s the other side of the world! 🙂

One last note about purchases, if you make a purchase, please leave a comment here on the blog and tell me what you purchased and where it was from. Some of the sites I sell through hide the buyer’s info from me, so I won’t always be able to tell who bought what. I want to make sure your purchases are properly accounted for!

Aly took and sent me this lovely shot of her carrying her tote bag! It was a bit strange at first to see my friend carrying a bag with my face in it 😉 We we both quite thrilled with the quality and according to Aly, it’s been getting tons of compliments and the straps are the perfect length!

INTROSPECTIVE is much more about self-discovery than it is about knowing what f-stops are or having fancy equipment. You don’t even have to have an actual camera; your phone will do perfectly well! The course emphasizes self portraits as a way to get to know yourself better, but the definition of “self portrait” here is quite loose. You never have to appear in an image unless you really want to. What I mean by “self portrait” in this case is simply any photograph which shows me something about who you are as a person!

This is a very relaxed, reflective class. There are no grades and no wrong answers! For eight weeks, you will receive a new theme each week and your assignment will be to create an image around that theme which reflects you. Love, joy and fears, for example, are all things you would be asked to create around.

This class is very unique! I modeled it after my own journey of self-discovery as I started taking self portraits. The art therapy was so helpful and healing to me that I wanted to give that back to the world in some way, so I createdINTROSPECTIVE!

And as an extra bonus, here’s a special coupon code for INTROSPECTIVE! Use the code May12ME25 to take 25 percent off the cost of the course! Now that’s a win-win-win!!

Wrapping up –

I know you guys hear me talk about ME quite a lot, but here’s the thing. It matters. It really, really fucking matters.

There is so much confusion, misunderstanding and so many flat-out lies about ME that we all need to work extra hard to shine the light of truth on it. It’s not all the public’s fault; after all, they’ve been lied to by medical professionals for decades. It all came unraveling in the 80’s when ME’s name was intentionally changed to “Chronic Fatigue Syndrome” and given the belittling nicknames of “the yuppie flu,” “the disease of depressed, menopausal women” and, more recently, “fat, lazy housewife disease,” just so insurance companies could deny patients coverage.

ME does not discriminate. It does not target people by color ,gender, social status or age. It attacks anyone and everyone it can. It destroys lives. It brings promising careers to grinding halts. It is not a way to “get a free ride;” we struggle just to sit up and get out of bed.

It could be your sister. It could be your boyfriend or girlfriend.

It could you.

How many more lives have to be sacrificed on the alter of insurance companies’ desires to not pay out before we get change? How many more patients have to take their own lives in despair? How many more seriously ill patients have to endure the most hateful slurs you can imagine being thrown at them? How many doctors will sigh, roll their eyes and tell us there’s nothing wrong with us psychically, that our problems are all in our heads?

No more.

We cannot let this happen to one more person. Too many have endured this already.

We have the power to make radical changes. We have the power to change society’s view of us, to force the government to give us proper funding, to stop treating us like Cinderella instead of their own daughters. We have the power to unlock the mystery of ME and find a cure. We CAN do this. But we must come together, make our voices heard and DEMAND it. It will never be easily handed to us. Too many huge companies are invested in not spending any money on those with ME. But while history shows us many ugly truths, it also shows us that we, the common people, have great power in our hands to bring about the changes we want.

We just have to ask for it loudly enough.

Please join me in demanding change for patients with ME. Things cannot continue the way they are any longer.

And as you help me advocate for invaluable change in the world, you’ll also be giving yourself a chance to win a gorgeous, fine art print 🙂 Help me with this. And thank you.

Footnote

[*Because the United States does not officially recognize the name “myalgic encephalomyelitis,” despite decades of public outcry for change and hundreds of thousands signing petitions, they continue to stick to “Chronic Fatigue Syndrome” or “fibromyalgia.” Depending on which doctor of mine you talk to, I may have three different diagnoses. The US is especially complicated in how it defines – or, rather, it’s lack of definition – the differences between the three so it’s impossible to talk about one in the US without talking about all of them. For the record, they are NOT all the same disease, but that is essentially how the US treats them. I know that what I have is ME and not the other two, but many of my doctors had not have heard of ME until I told them about it. ME has scientific, diagnosable guidelines, which I fit, but the country still refuses to adopt the name and its excellent guidelines. If you’re interested in learning more about why this is, here’s an article for you, but for this post, I will leave the subject there.]

May 12th – what is it?

May 12th is recognized across the globe as Invisible Illness Day. Though most people are unaware of its significance… which is part of the problem.

It’s a day for bringing more awareness to diseases like fibromyalgia, Chronic Fatigue Syndrome, rheumatoid arthritis, Lyme disease, lupus, multiple sclerosis and Crohn’s Disease, along with many others. Diseases which can have horrific, devastating effects on the person’s life, yet may not outwardly show. They can be completely disabling, and the patient still looks “normal” to the world.

And of course, this list includes myalgic encephalomyelitis, or ME, which I have.*

Post-exertional malaise (meaning you feel worse after you exert yourself — and the exertion can be as simple as a trip to the grocery store or walking to your mailbox).

Neurological problems, a.k.a. “brain fog.” This can manifest in the form of sudden clumsiness, tripping and falling, being unable to recall a word you knew just a second ago, suddenly forgetting how to read or write, forgetting your name… you get the idea.

Headaches of new or worsening kinds (I never had migraines until ME started sinking its talons into me).

Dysfunctional immune systems (if there’s a cold going around, I will get it).

Hyper-sensitivity to any and all stimuli — I describe it as the volume in my brain being turned up to “11.” Noises are very loud to me, lights are bright, smells overwhelming… the scent sensitivity means that anything artificially fragranced makes me nauseated, but it has led to me find small, unnoticed gas leaks inside houses on several occasions.

Post-Exertional Neuroimmune Exhaustion (your brain functions worse in every way after even minimal efforts — mental or emotional efforts as well, not strictly physical ones).

Low threshold of physical and mental fatigue (lack of stamina) resulting in a substantial reduction in pre-illness activity level — things you did before you were sick are now out of the question.

And so on. Because ME affects every system of the body, in a way somewhat similar to multiple sclerosis, the symptoms can vary from person to person, but these are the classic signposts of the disease.

I have what would be defined as a “moderate” case of ME. A mild case would be someone who could still maintain a somewhat normal life, but would probably need extra recovery time after big events, help lifting heavy objects, etc. Moderate, like what I have, is someone who can’t work a normal job, is partly or completely house-bound, may not be able to drive and has a great deal of their life impacted by the disease. Their world becomes much, much smaller and quieter. Severe cases… you wouldn’t wish them on your worst enemy. These are people who are completely bed-bound, unable to care for themselves in the most basic ways, unable to tolerate any light, sound or touch. They lay in dark rooms in silence, often on morphine drips for their severe pain… and this can last for decades. It’s been described as “a living death,” and for good reason. It’s truly horrifying. This is often the time when patients try to take their own lives.

My Kingdom Of ME video –

I would like to say that I spent a great deal of reflection on coming up with the idea of my bed being my kingdom, but it was more of a response to thinking, “Shit, I have this video… now I need a name for it…” But I think it holds true despite it’s spur-of-the-moment conception.

When you spend the vast majority of your time inside your house, it becomes your entire world. If, on a good day, I take Calantha for a walk around the block, I feel like a Viking setting off to explore new lands (but not planning on Blood Eagle-ing anyone). If my house is my world, my bedroom is my home, and my bed becomes my kingdom.

Though it is a queen-sized kingdom, it is a kingdom nonetheless. This is where I am most myself, most honest, most raw, most pure. I spend most of my time here, in my PJs, hair a mess and no makeup (because who’s going to see it, I don’t feel like putting it on, and I especially don’t feel like washing it off). This room is most set up for my comfort and is bent to my will. Why is there such a huge pile of stuff always on my nightstand, or next to my side of the bed? Because then I can reach it easily, no matter what state I’m in. Geoff’s side is spick and span, while mine is a crazy jungle, but that’s how it has to be. In this whole world of things which cause us pain and discomfort, we need there to be someplace that is designed for us. That is, usually, our beds. And in my bed, I rule.

My art and my Enchanted Sleep series –

Some people are surprised to learn I have a chronic illness, especially one which confines me to my house and bed so much, since I seem to produce a lot of art. It’s all the result of verycareful planning of everything. I keep my shoots very short and I plan several concepts I can shoot one right after the other while I have my model. My shoot is usually the only major thing I have planned for the week. Actually, it’s usually the only major thing I have planned that month. If we’re driving to a location, my model will usually drive us since I’m often feeling too tired. I try to bang out as many concepts as I possibly can, then I crash. Usually the next two or three days will be awful, and I will pay dearly for my shoot. But after that starts to wear off, I can sort through my images and work on editing them… which is only possible because I can do that with my laptop while lying in bed. If I had to sit at a desk, I could not be a photographer.

Using my laptop and my Wacom tablet, I can create art again. There was a while as I was getting sick where I was truly terrified that art would be taken away from me. In one sense, that did happen, since I had to put away the pencils and paintbrushes which became too painful to wield, but art abhors a vacuum as much as nature does, and photography quickly sprang up in its place, with help from my photographer husband.

Photography has given me a voice. But it’s more than that. It’s given a voice to all of us who suffer from these invisible illnesses. When I started shooting the images which would become a part of my Enchanted Sleep series, portraying what life with ME is like, I never dreamed that other people with illnesses would flock to it like they have. I unintentionally tapped into an underserved community, and those within it have made their approval loudly known. I didn’t set out to capture anything but my own experiences, but in doing so, I captured all of ours.

This is why you should care –

ME alone effects millions across the globe. There are millions and millions more who bear other invisible illnesses, and you might have no idea that they carry these with them everywhere they go. Most likely, you know someone with one of these illnesses, though it might be undiagnosed. Most of the invisible illnesses tend to be diagnoses of exclusion; meaning there’s no one test for this disease, so you have to rule out EVERYTHING else that it could be before you decide what it is. It’s a long, grueling process, and not everyone really wants to know what’s wrong with them anyway. For me, I couldn’t stand not knowing.

Your aunt who often complains of pain? Your friend who frequently has to cancel plans? Your sibling who gets migraines which always come at the worst times? They may have one of these diseases.

The online chronic illness community (spoonies, we call ourselves) is extremely supportive, but we need to have healthy people on our side too. We need real changes to be made in the world, and frankly, we are too ill to do it all on our own.

These are not diseases which merely dampen our fun or mildly cramp our style, these are diseases which kill. Sometimes that death is a suicide, as the patients cannot stand the suffering any longer. Even if left to more “natural” courses, these illnesses are evil thieves and rob us of years. They take away our livelihood, our joys, our passions and, eventually, our lives.

A DreamWorld/Enchanted Sleep crossover print giveaway!

I try to always do something around May 12 to help bring awareness to ME and its sister diseases. This year, I’m going to be giving away a print of a brand-new image… one which won’t be revealed until May 12th itself. It’s going to be a really, really great image though, I can promise you 🙂

This one will feature model Katie Johnson, and it’s so complicated, I’ve been working on it on and off for about two years. I had to put it aside for a long time until I upgraded my laptop. The file size was SO huge, I could only work on it for about ten minutes before it would crash my entire computer. Obviously, that didn’t work for me. It’s still a monster of a file, but on the new machine it only crashes Photoshop every few days, which is much better..

This image will be very unique in that it straddles both DreamWorld and Enchanted Sleep, a foot in each world like the Pillar of Hercules. No other image of mine does this. It will be a first on several fronts!

Another thing about this image that’s special is that it will be the first to be printed on my new, museum-quality paper of choice: Hahnemuhle pearl paper. You really have to see it to believe it. It is a thick, luscious paper with a bit of texture to it, similar to watercolor paper. What pushed me over the edge into switching to this paper though, is the very subtle, pearlescent shimmer built into the paper. It is magic. And it compliments the ethereal nature of my work so well, it seemed we were made for each other.

Did I mention that this special new print is a $400 value?

Is your interest peaked? Want to win the print for yourself? Instructions are right below. 🙂

This is how you enter –

Here’s how this giveaway works. It’s going to be very easy and there are quite a lot of ways for you to enter!

First thing: subscribe to my blog if you haven’t already. There’s a button in the upper right-hand section of the screen for you to enter your email address (which you may do safely, without fear of spamming or other annoyances). Do that, then move on to step two:

You have your choice here! You can either:

Retweet the facts I’ve tweeted about ME (these are embedded at the bottom of this post to make things super easy – you can like or retweet it without even leaving this page!)

You can do all of those, too! One note, if you choose to retweet any of my tweets, each new retweet will count as an entry. I’ve given you quite a lot to choose from, mainly because I couldn’t narrow it down myself any more! 😉 So, for example, if you retweet all 11 tweets, that will count as 11 entries for you. However, if you retweet the same tweet more than once, that does NOT count at as extra entry. The maximum possible Twitter-related entries you can get is 11. The same idea goes for the other social networking sites too. If you share my Facebook post, that’s an entry. If you share the same post twice (which I’m not sure you can do, but let’s say for argument’s sake that you can), then you still only get one entry.

And lastly, whichever social media platform you decide to use to enter the contest from, you must like/follow me there (and here on the blog) for the entry to count!

And a couple of other ways to enter –

Now, those are all very important ways for you to enter the contest to win a gorgeous print for yourself. A large part of why the entries are based in social media is to help raise more awareness about ME (and other invisible illnesses) by word of mouth. However, there is another way you can get more entries for yourself.

Any purchases on ANY of the items I sell from today, May 4th, through midnight, PST, May 27th will count as entries! This means that EACH INDIVIDUAL ITEM that you buy counts as its own entry. If you buy five t-shirts from my Red Bubble shop, that’s five extra entries for you!

And on top of the purchases going toward extra entries for you, 25 PERCENT of ALL PROFITS on ALL ITEMS purchased will be donated to theMicrobe Discovery Project! The Microbe Discovery project is a wonderful organization here in the US actively looking for a cause and cure for ME. I strongly believe in what they do, which is why I have chosen them to benefit from my sales.

It’s a very win-win situation! You get to buy whatever it is that you’ve had your eye on, you get extra entries into the print giveaway and ME research is supported at the same time!

On May 29th, I will randomly pick one winner from all the entries and that person will receive the print! It will be signed and numbered and shipped to wherever you live, even if it’s the other side of the world! 🙂

One last note about purchases, if you make a purchase, please leave a comment here on the blog and tell me what you purchased and where it was from. Some of the sites I sell through hide the buyer’s info from me, so I won’t always be able to tell who bought what. I want to make sure your purchases are properly accounted for!

Aly took and sent me this lovely shot of her carrying her tote bag! It was a bit strange at first to see my friend carrying a bag with my face in it 😉 We we both quite thrilled with the quality and according to Aly, it’s been getting tons of compliments and the straps are the perfect length!

INTROSPECTIVE is much more about self-discovery than it is about knowing what f-stops are or having fancy equipment. You don’t even have to have an actual camera; your phone will do perfectly well! The course emphasizes self portraits as a way to get to know yourself better, but the definition of “self portrait” here is quite loose. You never have to appear in an image unless you really want to. What I mean by “self portrait” in this case is simply any photograph which shows me something about who you are as a person!

This is a very relaxed, reflective class. There are no grades and no wrong answers! For eight weeks, you will receive a new theme each week and your assignment will be to create an image around that theme which reflects you. Love, joy and fears, for example, are all things you would be asked to create around.

This class is very unique! I modeled it after my own journey of self-discovery as I started taking self portraits. The art therapy was so helpful and healing to me that I wanted to give that back to the world in some way, so I createdINTROSPECTIVE!

And as an extra bonus, here’s a special coupon code for INTROSPECTIVE! Use the code May12ME25 to take 25 percent off the cost of the course! Now that’s a win-win-win!!

Wrapping up –

I know you guys hear me talk about ME quite a lot, but here’s the thing. It matters. It really, really fucking matters.

There is so much confusion, misunderstanding and so many flat-out lies about ME that we all need to work extra hard to shine the light of truth on it. It’s not all the public’s fault; after all, they’ve been lied to by medical professionals for decades. It all came unraveling in the 80’s when ME’s name was intentionally changed to “Chronic Fatigue Syndrome” and given the belittling nicknames of “the yuppie flu,” “the disease of depressed, menopausal women” and, more recently, “fat, lazy housewife disease,” just so insurance companies could deny patients coverage.

ME does not discriminate. It does not target people by color ,gender, social status or age. It attacks anyone and everyone it can. It destroys lives. It brings promising careers to grinding halts. It is not a way to “get a free ride;” we struggle just to sit up and get out of bed.

It could be your sister. It could be your boyfriend or girlfriend.

It could you.

How many more lives have to be sacrificed on the alter of insurance companies’ desires to not pay out before we get change? How many more patients have to take their own lives in despair? How many more seriously ill patients have to endure the most hateful slurs you can imagine being thrown at them? How many doctors will sigh, roll their eyes and tell us there’s nothing wrong with us psychically, that our problems are all in our heads?

No more.

We cannot let this happen to one more person. Too many have endured this already.

We have the power to make radical changes. We have the power to change society’s view of us, to force the government to give us proper funding, to stop treating us like Cinderella instead of their own daughters. We have the power to unlock the mystery of ME and find a cure. We CAN do this. But we must come together, make our voices heard and DEMAND it. It will never be easily handed to us. Too many huge companies are invested in not spending any money on those with ME. But while history shows us many ugly truths, it also shows us that we, the common people, have great power in our hands to bring about the changes we want.

We just have to ask for it loudly enough.

Please join me in demanding change for patients with ME. Things cannot continue the way they are any longer.

And as you help me advocate for invaluable change in the world, you’ll also be giving yourself a chance to win a gorgeous, fine art print 🙂 Help me with this. And thank you.

Footnote

[*Because the United States does not officially recognize the name “myalgic encephalomyelitis,” despite decades of public outcry for change and hundreds of thousands signing petitions, they continue to stick to “Chronic Fatigue Syndrome” or “fibromyalgia.” Depending on which doctor of mine you talk to, I may have three different diagnoses. The US is especially complicated in how it defines – or, rather, it’s lack of definition – the differences between the three so it’s impossible to talk about one in the US without talking about all of them. For the record, they are NOT all the same disease, but that is essentially how the US treats them. I know that what I have is ME and not the other two, but many of my doctors had not have heard of ME until I told them about it. ME has scientific, diagnosable guidelines, which I fit, but the country still refuses to adopt the name and its excellent guidelines. If you’re interested in learning more about why this is, here’s an article for you, but for this post, I will leave the subject there.]

I think it’s fair to say that 2014 has been something of a tumultuous year. A lot of very good things happened! And a lot of rather shitty things have happened to. Let’s touch on the bad first and get that out of the way.

There was a heavy dose of bad this year. Some of this has been discussed on the blog; three months of colds, sinus surgery, sinus surgery having dramatic and frightening complications, etc. A lot of it has not been discussed on the blog, however; this does not feel like the proper forum for a lot of the more personal matters, especially ones which involve people other than myself.

Geoff and I have to move. We are really, really, really not happy about this. I’m not going to discus the reasons for the move here, except to say that no one did anything wrong. We always paid our rent, etc. This is a heartbreaking blow; our neighbors have become like true family to us. And while we won’t live too far apart after we all move to our new homes, it will never be the same as when we all lived together on the Compound, as we called it.

When my first surgery complication began and I started bleeding profusely from my nose to the extent that I was truly concerned that I might need an ambulance, our neighbor John came rushing home to make sure I was ok until Geoff could get there. Once John and I decided an ambulance wasn’t needed, he sat on the floor with me and kept me calm and distracted.

When I found myself suddenly clutching a whole litter of baby opossums and in charge of their safety, Donna came to the rescue and helped me keep them safe. (They were eventually taken to a no-kill shelter which would rehabilitate them then release them into the wild when they were old enough.) These are not your average people. When we all found out that we’d no longer be living together, everyone cried openly.

One of the baby opossums

And good heavens, it’s been so good for Calantha to be there! Having a “pack” next door which she can come and go from as she pleases helped her put on a needed five pounds, which she’s maintained the whole time we’ve been here. Basically, absolutely everyone is extremely unhappy about this for a lot of reasons, but there’s nothing we can do to stop it.

Calantha, modeling the Lady Death bonnet

And of course I’ve been able to do a LOT of shooting there! There are SO MANY trees; it’s very easy to make the background look like a forest if you just frame around the tell-tale signs of human habitation. When you’re dealing with ME, being able to do an entire shoot without leaving your yard, or even getting out of your PJs if you want, can be an incredible boon.

This has also been an extremely tight year financially for us (which a move isn’t going to help). Again, I shouldn’t go into exact details here, but a large part of our income vanished early this year and we’ve been trying to stanch the metaphoric bleeding ever since.

Those are the biggest highlights of the bad, of the things I feel I can talk about here. It’s been a really difficult year and there have been many times when I’ve dissolved into tears over one more bad thing happening. The world has felt completely against us most of the year, no matter what we’re planning or how noble it might be, which of course feels terribly unfair. I’m holding out hope that this is all happening for a reason and that things will change soon. Some days that’s a very difficult hope to hold on to. I’ll talk a little more about this when I discuss this year’s new image.

Let’s move on to happier topics for now. Let’s talk about some of the good things that happened this last year!

I got to work with some really fantastic new models, Dan Donohue and Travis Weinand. They were both wonderful; the kind of models who make you want to come up with new concepts just for them. I’m looking forward to working with both of them again!

Peter S. Beagle and George RR Martin with unicorn and dire wolf plushies, in front of my prints!

My dear friend and frequent model Katie Johnson started a video series interviewing some of the wonderful photographers she works with called Artist Profile. Katie was kind enough to start the series interviewing me; you can see the video below! The series has been really interesting to watch grow and I’m very honored to be a part of it!

But I think the feature I’m most proud of came from winning a contest from Good Light! Magazine, hosted by Viewbug. The contests’ theme was “People and Water.” My image “A Drop of Blood” was chosen as the winning photo, which of course was just thrilling! But the prizes were really meaningful to me; first, a feature on View Bug’s blog about how I captured the image. Next was a really lovely article in Good Light!’s magazine about why the image was chosen:

And then my very favorite part was watching the short video where you can actually hear from the contest’s judge himself (and hear it in his lovely accent!) about why the winning images were chosen. It was truly thrilling and embarrassing to hear someone say such nice things about my photograph! Although I will gently note that the title came first and the image was built around it, not the other way around, but I can certainly see how it could confuse people!

Now, in less photography-related news, Geoff and I got to see the Breaking Bad House. We also celebrated out 3-year anniversary of being married, which Geoff worked hard to made special despite me being deep in the hell of every-three-week-colds.

Happy anniversary!!!

At the advice from Patti Penn, my Reiki teacher, and Geoff, I started making an important mental shift. I realized that I was looking at my future with ME as written in stone; that it was a pre-determined fate for me to always be sick with it to some degree. Sure, you hear about some people who go into remission, and even more rarely, are cured, but it was too painful to hope for that. I tried to not expect that I would always get progressively worse, even though that seemed to be the direction everything was heading in, regardless of whatever diet or lifestyle changes I made. It was less scary to expect that I’d always be dealing with it to some degree; opening myself up to the idea that I might get better some day was making myself vulnerable to extreme disappointment.

But I slowly started realizing that if I expected to always be sick, it would become a self-fulfilling prophecy and I would always be sick. So as frightening as it might be, I had to start letting the idea of being healthy enter my life. And it was very scary, very difficult. Knowing you’re going to be fucked for the rest of your life is something you can adjust to, prepare for and learn to accept. Having the possibility of healing destroyed the mental plans I’d been preparing myself for, and while it would be a very, very good thing to find myself well, the risk of shattering disappointment was so great, I didn’t want to even entertain the idea.

But I needed to embrace that idea, as terrifying as it might be. Geoff and Patti both brought up the same idea to me, completely independent from each other and without knowing what I’d been thinking through. It seemed like a very clear sign. So I’m taking a deep breath and plunging into the frightening unknown. The unknown where I could get better some day. And if I don’t get better, it certainly will be heartbreaking. But if I don’t allow myself to be vulnerable in this way, then I definitely will not ever get better.

This is one of my big plans for 2015. Every day, instead of dwelling on what I couldn’t or didn’t do, focus on what I did do. Even if 99.9% of me feels like complete shit, focus on that .01% where I felt good. Instead of being frustrated, angry and disappointed with the limitations of my body and mentally say nasty, demoralizing to it, I’ll praise it for the good it did. I’ll tell it that I know it’s working so hard, that it’s trying its best and that I appreciate all the effort it goes to. It will take time to make this mental shift, but it’s worth making it. And I will practice grace with myself, both in what my mental dialogue is and with however long it takes me to heal. I believe this is the only way I have any hope of getting completely better some day… and no matter how painful that hope can be sometimes, I will commit to it.

I’ve got a lot I’ll be working on through 2015. I have big plans for my Glass Walls series, which explores animal rights, along with continuing to build DreamWorld. A couple burners are being kept busy with Peter Beagle/Conlan-related plans. And I’ve got numerous projects at various points of completion which I’ll be sharing with you when I can 🙂

I’ve scattered some of my favorite images taken over the past year throughout this post (many of which you can find in my 2015 calendar, on sale here!), but I wanted to leave you with something to inspire you in your own photo creations! So, in no particular order, here are some of the photographers I recommend you start following right now, if you haven’t already! There may be some nudity, so just keep that in mind.

And lastly, though she is not a photographer, I highly recommend following Katie Johnson, one of the models I work with most frequently. She writes blogs for several site which cover a variety of subjects and angles. If you’re interested in modeling or pole dancing to gain confidence, you’ll find her a kindred spirit. If you’re a photographer, many of her articles are directed at you and will help you improve your photographer/model relationships. Plus, she’s just the loveliest person and one I am happy to have in my life and call a friend 🙂

So… this new image. As I’ve said, it’s really been a pretty rough year, all around. I watched a movie with my mom recently, on a day she came to visit me after my surgery and make sure I actually laid down all day (something I have trouble doing).

Winter’s Tale ended up being very much a “Sarah movie” as Geoff calls them. Critics weren’t overly taken with it, and I can see their arguments, but at the end of the day, I still really enjoyed the movie. It’s hard to make mythic, hopeful movies which are sweet without being cloying or heavy-handed, and I felt that Winter’s Tale balanced itself well. It’s also very beautiful visually and several of the themes inspired new creations of my own.

One of the movie’s main points is that “everything happens for a reason” (even the bad things). This has been such an incredibly trying year; right now I can’t imagine good reasons for the numerous bad things which have hounded Geoff and me this year. This image is sort of a peace-offering in a way. A symbol to the universe to say I don’t know what the purpose of these things could have been, but I’m going to trust that there is a reason. And not just any reason, but a good one. One I will look back on later and smile, thinking of all the heartache and knowing it had been worth it.

This is the attitude I want to start 2015 off with. A humble admission that I don’t have all the answers, and never will, but that I am continuing my direction of my life in the hope that tremendous good will be found along this path. At the moment it feels a bit like a blind faith, but I have decided this is the mindset I need to start off 2015. I am taking my leap; I hope the universe catches me.

Just a quick entry from me as I enjoy my Christmas Eve with my family and loved ones. I had a couple new features come out in the past few days, and I always try and post about them here as well as my other social media outlets. It just seems like the polite thing to do when someone goes to the trouble of talking about my work!

Firstly, we have Slovak Art Magazine. They ran a lovely feature on my work in their latest issue, #13.

There is some really outstanding artwork in the magazine, so it is well worth looking at on its own and not just to see my work 😉

Second, I’m really pleased to say that one of my images won a contest sponsored by Good Light! Magazine. The theme was People and Water, so I thought one of my underwater images from my Glass Walls series with Katie would fit well. Apparently they thought so too since they chose it as the winning image!

They wrote a feature about the image which was lovely and full of comments which make me want to blush, but I’m going to share it here anyway.

And as if that weren’t enough nice things they said, there’s also a short video where the judge talks about why he chose the winning images (and he has a lovely accent as well!)

I’ll just say that the title came first, then the image, not the other way around, but it’s easy to see how you could mistake it!

So no… this is not especially Christmasy, but I have not had a moment to put this together until just now! And while I have thanked the magazines themselves, I think it’s important to promote it online as much as possible. It’s just good photography manners.

With that all said, I hope all of you who are celebrating Christmas have an absolutely WONDERFUL one tomorrow! Make sure you get to sleep early so Santa has time to leave you something nice. And of course, the most important thing of all about Christmas… I hope it is filled with people and animals you love, that you’re able to express your love to them all and they say so to you as well.

Presents are lovely. Feasts of good food are something we should be very thankful for. But the heart of the holiday is sharing love with one another. I hope you give and receive lots of it 🙂

I was invited to join in something of an art-blog-chain-letter and it sounded fun, so here we are! Thanks to Hand Andy Pandy for inviting me! I’m very pleased to be able to call this very talented photographer and self portrait artist my friend. You can find him on his site, Twitter,Flickr and Google +. He’s nearing the end of a really wonderful, whimsical and humorous 365 project, which I would highly recommend you check out! I have great admiration for people who not only can start and finish a 365, but especially for people like Andy who do a high-concept piece each and every day! It’s draining for me to just think about; I have no idea how other people do it, but I admire it! You can see Andy’s blog hop post here!

Chocolate and Vanilla, by Handy Andy Pandy

The blog hop requires everyone to answer these four questions:

1. Why do I do what I do?

The short answer is because I can’t not create. It’s just a part of my soul. Days when I’m very ill or in too much pain to work are incredibly miserable for me, not so much because I feel physically bad, but because my ability to create is stifled. I’ve tried just about every visual artform there is and many non-visual ones (with varying degrees of success) but photography has been the best thing for me and resonated the most with me. It also helps that I can do much of my editing while laying down in bed with my laptop; that gives me a MUCH greater ability to work on images than if I had to sit in a chair at a desk.

Where Earth Meets The Sky, model Katie Johnson

2. How does my work differ from others of its genre?

I suppose the biggest way my work differs is that I’m drawing from my own experience and inspiration, which is inherently different than anyone else’s. Even if there’s another female, conceptual, fine art photographer and self portrait artist who has ME and really, really loves Peter S. Beagle and Robin McKinley, our work would still be different because of the forces which have shaped our souls. I also think being self-taught helps you develop a unique style since you’re always traveling on the path toward creating the vision you had in your head and have to figure things out as you go. There’s nothing wrong with formal education, and being self-taught can leave odd holes in your knowledge, but from my experience, it’s often helpful to artists maintaining their individuality.

The Court Of The Dryad Queen – model Dedeker Winston

3. How does my creative process work?

It depends somewhat on the image, but I’ll give you a couple examples. There’s always some kernel of inspiration which explodes into a concept; I’ll often make rough sketches or make notes about how I want it to look, what fabric/location to use, colors, mood, etc. Anything important that I’m afraid I’ll forget. If I need to build costumes, props or sets, I do so. I photograph my concept, and sometimes I stick exactly to my original vision while other times I discover as I’m creating that there are better ways to express whatever it is I’m wanting to express.

After the images have been shot, they move into my editing queue, where they could languish for anywhere from a few hours to many months. Once it’s that image’s turn to be edited, that can take anywhere from a few days to months. Then, after all that time, I finally declare the image done and release it onto the internet!

In The Lilac Wood – a self portrait

4. What am I working on now?

I’m always working on 50 different things at once, but I’ll give you the highlights. DreamWorld is constantly in some state of creation; I have a number of images to edit as well as pre-production tasks on my to-do list. What’s lined up next to edit are a few shots inspired by HBO’s True Detective, so I’ll be re-watching the series to soak up the flavor as I edit. Oh darn 🙂

The Shadows Lengthen – the first True Detective-inspired image I created (but not the last!)

These very talented photographers are also putting blogs up today, and I’m happy to count them as friends as well as!

At this point, I’m supposed to link to the artists who will continue the blog hop next week, but for a variety of reasons, I wasn’t able to get in touch with all my artist friends and ask them. So, if you’re reading this and would like to carry it on next Monday, feel free to! Let me know and I’ll post a link to you 🙂

First things first: the light. Let’s get to the winner of The Blue Ribbon! Drum roll please…

Congratulations, Brittany D. Perkins!!! You havewon a beautiful, 10″ x 15″ print of The Blue Ribbon!. Your print will come on beautiful, shimmering, pearlized, archival paper and will be hand-signed. Please send an email to me at sarah@sarahallegra.com with your mailing address and I’ll get it to you!

What do you guys think? Was that fun? Something we should do again? Did the tweeting format work for you? Let me know your thoughts and I can fine-tune my contest process to make it better for everyone! Don’t forget that my fundraising will continue for the entire month of May, so stock up on your art purchases now while they’ll do the most good!

I think I was telling you guys about the evolution of this character. I’ve always had a thing for horns and antlers on people (see my very first self portrait as proof) and wanted to work them into DreamWorld from the beginning. As with most mythologies, I felt there was room for a Puckish, trickster character, which is what I had in mind when I started constructing this creature. The beginning of my work on him coincided with the beginning of True Detective, a pure coincidence, but True Detective’s ominous Yellow King bled into my concept, and before I knew it my trickster had transformed beyond a mere Puck or even Loki into the DreamWorld version of The King In Yellow.

DreamWorld is an ever-evolving place, and while this King is the first sinister character to be portrayed, there are other forces at work. We will meet them eventually. For now, I think it is enough to know that the King in Yellow has been sent into exile by DreamWorld’s true King for trying to usurp the throne and plunge DreamWorld into darkness. He has been foiled for now, and is thus known as they Exiled King, though some still whisper of the King in Yellow and restoring him to his rightful, dark glory along with those who seek the same goals… but I don’t worry. The King is strong and benevolent. And we haven’t even met the Queen yet, though we will soon. She also rules for good, and is not to be taken lightly.

Let the whispers and secrets travel where they will. The King in Yellow has been sent into exile as a merciful punishment, but I doubt a second grab for the throne would be met with such leniency.

Now that you know about the Exiled King, want to see how he came to life?

My initial inspiration for the antlers was the Makhor goat’s horns, such as seen in this stock image:

Horns are always tricky to build for human heads. Making them stable but light, keeping them balanced on the head while trying to appear that there’s no supporting structure at all… they’re always a nightmare to make. And I knew these ones were going to be the largest pair I’d made yet. As usual, I dove in without a real plan and figured it out as I went.

I started with a regular headband and some strong but light wire, wrapped around itself and twisted generously onto the headband. I began introducing the twisted shape by wrapping it around my arm a few times.

I wrapped a thin layer of newspaper over each wire frame, adding a layer of masking tape on top to help it hold its shape and smooth it.

Looking very lop-sided at the moment

I initially tried spraying the antlers with spray adhesive to try to help smooth the antlers further, but all it really did was make it tacky, even after it had dried. I sighed and decided I’d try and use it to my advantage by covering the antlers with a layer of metallic gold tissue paper (which smells really weird, by the way). I filled in some of the larger dips and gaps with hot glue and added a little more tissue paper, but I knew I’d end up having to do a little smoothing to them in post production. I don’t remember why now, but I ended up getting these finished just the evening before my morning shoot, so I didn’t have more time to tinker with them and make them absolutely perfect.

You can see here the careful support structure I created literally with toothpicks and popsicle sticks broken into smaller strips. Sometimes the most straight-forward way is the best way 🙂 They’re also reinforced with a little bit of monofilament line to help them not bow away from each other.

With the antlers done, I moved onto the leaf mantle. I used approximately a billion fake leaves for this which I’d collected over several years and a number of projects. I still found myself nearly running out by the end and had to ration them carefully. I concentrated on the leaves around the face first, which also conveniently covered the antler’s headband and support structures.

A full mantle of leaves

I’ve had this one vest in my “costume” supplies for a very long time and I just love it. It looks very rugged and home-spun and fits a very wide variety of looks and styles. I’m pretty sure it was made for someone closer to my size than Dan’s, so I quickly added extra length to it by cutting straight through the shoulder seem and building a new shoulder strap with leaves hot glued to each other. The yard provided a wealth of beautiful acorns to choose from and use as buttons. And don’t worry, the squirrels still had more to eat than they ever could.

Next was the big leaf amulet. I’d gotten this pack of huge, very realistic leaves probably two years ago and had been holding on to them, waiting for them to become useful. Now was their time! This heavy chain was also in my stash for similar reasons, and became a lovely chain for what would be a leaf amulet.

Some smaller, gold-dusted leaves, a large gold key and an amber-colored, leaf-shaped crystal finished it off.

Almost done!

Leaf slipper tops

The very last thing I made were “leaf slippers,” for lack of a better word. They were just several leaves glued together with elastic straps to help keep them on Dan’s feet; super easy!

Leaf slipper bottoms

I also cut up some strips of a golden-brown, rustic-looking cotton to tie around Dan’s sleeves and pant legs, but that would be assembled the day of. As far as my prep work went, I was done! I honestly can’t remember exactly how long the whole costume took to make… several days of solid work, no sleep? Eight weeks? I have no idea, but it was long. When I’m deeply involved in a project like this, time melts away for any practical use.

Before I get more into this, let me back up and tell you about Dan Donohue, who so beautifully brought my character to life. Dan is celebrated actor, best known for his extensive theater work. He played Scar in Disney’s Broadway version of The Lion King and left for Oregon almost immediately after our shoot to go play Henry the III at the Oregon Shakespeare Festival’s version of Henry the III, as well as the father in their production of A Wrinkle In Time. You would never believe from meeting him that he does evil and sinister so well; he is truly one of the kindest, most enthusiastic and genuinely lovely people I’ve had the pleasure of working with. But the moment I told him to be a villain, it all fell away and for a second I had to catch my breath because he so completely embodied The King In Yellow. Dan is a muse if I’ve ever met one and a pure delight to work with! He’s also very creative and funny, as I’ll get into more later.

The morning of the shoot came quickly, Dan and I found our location and the entire shoot was easy and felt effortless. There may have been a bit more effort on Dan’s part trying to keep his antlers and mantle from toppling over if he moved his head too far in any direction, but it seemed that his theater experience really paid off and helped him manage this probably cumbersome bit of costume beautifully.

Antler wrangling

Generally when I shoot new DreamWorld characters, I edit one or two images; maybe three if I feel they’re all really compelling, but in this instance I edited five. This is almost unprecedented. The only other time I’ve edited more photos from a single concept, with no costume or location changes was for the Katie’s World set. That says quite a lot about how perfectly Dan was able to become the Exiled King. But enough talking about them. You want to see the images, right?

You’ve seen this first one already since I used it to tease the series, but I’m posting it again so the whole set can be seen together as intended. To set the mood, here are the two quotes which most directly influenced how I took the set, one from Robert W. Chamber’s book The King In Yellow and one from True Detective.

“Him who eats time. Him robes; it’s a wind of invisible voices. Rejoice, death is not the end! Rejoice, death is not the end! Rejoice, Carcosa!”
– Miss Delores, True Detective episode 7, After You’ve Gone

The Shadows Lengthen

The Shadows Lengthen – detail

The Shadows Lengthen – detail. Dan’s hand here kills me every time, it’s SO PERFECT. I never knew a single hand could be so expressive, yet it is.

Pliable Reality – shot using a home-made “Lensbaby” which was the top of a water bottle

Pliable Reality – detail

Pliable Reality – detail

Pliable Reality – detail

Where Black Stars Rise

Where Black Stars Rise – detail

Where Black Stars Rise – detail

Where Black Stars Rise – detail

The Tatters Of The King

The Tatters Of The King – detail

The Tatters Of The King – detail

And perhaps my favorite of them all….

His Robe Is A Wind of Invisible Voices

His Robe Is A Wind of Invisible Voices – detail

His Robe Is A Wind of Invisible Voices – detail

His Robe Is A Wind of Invisible Voices – detail

His Robe Is A Wind of Invisible Voices – detail

Whew, still with me? I know that was a long post, but I had a lot of photos to cover!

He’s not REALLY evil, he just pretends really well!

The only sad thing is that we never got to see how well Dan managed his leaf slippers, but trust me, he killed it like everything else.

Thank you so much to Dan for being the perfect King in Yellow and furthermore being extremely patient as I slowly edited all of these!! Hopefully we won’t have to wait too long to see the Exiled King’s companions and cohorts! Dan has been invited back again whenever he returns to California, so he may pop up in more photos; I hope so 🙂